My Story, So Far…

My goal for The Daily Migraine is simple: to create a community to help as many people as possible get rid of their chronic migraines through help, healing and humor.

Hello!

My name is Lisa Jacobson, and I’m very much like you—a chronic migraine sufferer. I have experienced daily migraines for the last 25 years. I’ve never given up during each of those 9000+ migraine days, and I hope my journey might be motivating to you in your quest to find a solution for your own migraines.

When I first realized I had this condition, there was virtually no research on chronic migraine, and except for two YouTube videos of sufferers, and a few random posts on bulletin boards for other illnesses, I couldn’t get much traction on resolving my migraines. My wish is to save you many of the years I spent rooting around for information and hope. My goal for The Daily Migraine is simple: to create a community to help as many people as possible get rid of their chronic migraines through help, healing and hope. First I created this website as a “how to,” contributing my ideas, tracking system and resources. Secondly, I brought together over 250,000 migraineurs worldwide on Facebook, Instagram, Twitter, YouTube and Pinterest to let you know about new medical breakthroughs, answer your most pressing migraine questions, and create migraine art to make you shake your head in recognition, offer hope and give you a good laugh when nothing else seems funny. My vision is to generate enough strength in numbers to raise awareness, support research, and execute initiatives to help chronic migraineurs reclaim their lives.

Each of us has a different story and journey. This happens to be mine:

I had neck surgery in my twenties and a month later had my first migraine. They came slowly at first, but soon appeared daily. I learned that of the 36 million people with episodic (occasional) migraine, 10% have a complication of migraine called chronic migraine where we end up with daily migraines. Over time our bodies get used to being in pain and it gets harder and harder to turn back.

Like so many of us do, I would writhe on the cold bathroom floor looking for relief, have to cancel plans and disappoint people at the last minute, and take so much medicine that I felt like my body was a pharmacy. People called me Morticia because I stayed inside on hot sunny days and was in the best mood when I awoke to dark, cold and cloudy!

I quickly surmised that nothing was going to change unless I “owned” my migraines, so I did, and then set to work creating a systematic approach to eliminating them.

I was unstoppable. I scoured scientific journals, books and articles. I was so desperate that I attended a medical conference on migraines -- for doctors! I discovered headache clinics and found physicians who specialized in migraines only. Still, I was impatient with trying one treatment at a time (especially since none of them worked) for the full three months between appointments. I kept a list of treatments I wanted to try someday; it quickly ballooned to 50. I decided on a new approach: my doctor and I would choose three treatments from our list (one preventative medicine, one alternative therapy and one “other”), and I’d give them a rigorous three month trial. Meanwhile, I’d have another three ready to deploy if those didn’t work. In this way I always held out hope for the future. Friends wondered “how will you know which one worked if you get better?” Answer: if I get better, who cares!

My enthusiasm turned into desperation as I watched as the days turn into years, which then astonishingly turned into decades. No real solutions ever materialized. About two years ago I was at an all-time low, with daily blinding migraines. For years because I couldn’t find treatments that would prevent my migraines altogether, my only option was to take abortives (triptans) to at least abort the pain for a day. I always felt lucky to have the option of triptans, which I considered wonder drugs. However, the limit is two pills per week or there is a risk of “Medicine Overuse Headache” where the meds that take away your migraine start giving you one! My migraines were getting so bad that I was up to taking 10 triptans a week. I was frightened of the long-term effects and worse, I feared the pills might stop working, rendering me completely non-functional. I decided to finally play the card that had been in my back pocket for many years: booking a stay in a two-week inpatient chronic migraine clinic a thousand miles away. The program would start in a few months. I had to just hang on until then.

My enthusiasm turned into desperation as I watched as the days turn into years, which then astonishingly turned into decades.

Meanwhile, I had an epiphany. Although I hadn’t eliminated my own migraines, I had accrued a voluminous amount of information about chronic migraine and developed a research and tracking system that worked really well for me. I had also worked with highly-regarded doctors who had taught me many things that I could never have found online. If I couldn’t fix myself, perhaps I could use my resources to help others whose migraines might respond to treatments that were unsuccessful for me.

With ice plastered onto whichever eye had the invisible stake through it that day, I began mapping out my plans to help other chronic migraine patients, and then the most astonishing thing in my life happened…my migraines went away!

Meanwhile, I had an epiphany. Although I hadn’t eliminated my own migraines, I had accrued a voluminous amount of information about chronic migraine and developed a research and tracking system that worked really well for me.

What happened?

My next doctor’s appointment was coming up, so I started analyzing my data from my migraine tracker and looking for patterns as I always did prior to my visits. This time I noticed something immediately: I didn’t have migraines 20 days during the past year, and when I looked at the calendar I was incredulous to discover that every one of them had occurred during my 20 vacation days! This new information was confusing because I had always had daily migraines on vacation. Fortunately I had another vacation coming up. My doctor urged me to note every possible difference, and to really think creatively. What if I were allergic to my pillow at home, for instance?

Sure enough, I got on the plane and the migraines vanished. I tracked everything that was different on vacation, which was...everything! I then boarded the plane home and the migraines returned immediately.

My doctor and I were excited about these strange clues, and now he finally had something palpable to dig into. We discussed the fact that I had made a conscious decision to leave all my stress at home that year while on vacation (separating from my phone, no work, no taking on other people’s stressors, etc.). He threw out a wild theory that perhaps the threshold for a stress-causing migraine was now so low for me that I literally always had a migraine, and only when all stress was completely removed would my migraines disappear.

My doctor and I were excited about these strange clues, and now he finally had something palpable to dig into.

He laughed that he was going to write me a prescription for a permanent vacation. But the tremendous challenge was clearly how to get in vacation mode during every day life. He prescribed an anti-anxiety medication that he believed might raise my threshold enough to withstand the daily stress that might be causing migraines. Another doctor suggested I ratchet up my exercise to produce endorphins, which would act as a natural painkiller. My dentist suggested a TMJ device. Now I had my three new treatment options for the next quarter. I was stoked.

Two months passed and none of the treatments were working. I was thoroughly deflated. When I went for the routine EKG for that inpatient clinic I’d soon be attending, my doctor called immediately saying there was a slight chance my heart was damaged. That tapped right into my underlying fear of the long-term effects of decades of daily triptans. I took the next day to focus on sending my child off to college. The following day I resolved to stop the triptans for good.

Ultimately my heart was fine, but I didn’t know that yet. For the first two days without triptans I nursed the migraines with measly ibuprofen, caffeine, showers, massage and my head packed in ice like I was in the window of a fish market.

The third day I was in the kitchen, lights dimmed, earplugs in, nauseous and cooking dinner, as usual. Suddenly—and I mean in a flash—the migraine “broke.” My head felt crystal clear like never before. I had a sudden surge of adrenaline. Thoroughly confused, I went straight to bed. Imagine my amazement when I awoke with no migraine. Same the next day. Then 5 days like on vacation. And then—oh my God—10!...then 30!...then 6 months! And here I am, still counting.

The third day I was in the kitchen, lights dimmed, earplugs in, nauseous and cooking dinner, as usual. Suddenly—and I mean in a flash—the migraine “broke.”

Ironically I began writing this story from home during the two weeks that were earmarked for the inpatient headache clinic. I’m so happy to report that I took the time off instead to create The Daily Migraine.

So which treatment worked? Quitting triptans? Heavy exercise? Anti-anxiety medication? TMJ device? Child making a successful transition to college? The answer is I may never know. Yet I still cannot get my head around the fact that I had my my migraines continuously for 25 years, and then they went away in literally an instant.

I’m calling this “My Story So Far...” because I’m mid-journey. My migraines may be gone forever, or I might be in “remission.” For now, I keep it simple and feel blessed every day I awake without head pain. People ask me if I lost weight or “did something different (I know they mean cosmetic surgery!).” I tell them I look like this simply because for the first time in 25 years I am not in any pain.

I hope The Daily Migraine will give you help and healing (with some humor as well). The “how to” website and the Facebook, Instagram, Twitter and our other social media communities will give you dozens of ideas to discuss with your doctor. He or she will serve as your partner on your own migraine journey to discover the treatments that will hopefully eventually reduce or eliminate them.

For now, I keep it simple and feel blessed every day I awake without head pain.

What I want to say above all, is that it’s critical to never give up, no matter how low you feel. I post on the social media channels usually three times a day with ideas for you to try, new research being done and thoughts for you to consider—and The Daily Migraine community comments on everything with their own experiences and opinions. If you are new to this site, the best place to start is with The Process section. I have created downloadable forms for you to begin The Daily Migraine journey Here’s to help and hope—with a dash of humor.

My vision is to generate enough strength in numbers to raise awareness, support research, and execute initiatives to help chronic migraineurs reclaim their lives.